Our son Matt has brought such joy to us and through him we have learnt so many things about ourselves and life. He has a rare genetic syndrome called Rubinstein-Taybi Syndrome. This blog is where we process the things we have learnt, where we share our challenges and pains, and where we celebrate small victories.

Wednesday, July 22, 2009

Sunday, July 19, 2009

I recently updated my facebook status by saying that “it’s like spring in Matt’s life as he is blossoming all over the place”. One of the main areas of blossoming has been his communication. A precious consequence of this is that Matt and I are growing closer as we better understand each other. Matt is constantly demonstrating that he understands way more than one might think. If I ask him to find a favourite toy he will seek it out and bring it back to me. Sometimes when I am speaking to others he might pick up on a word that I am saying and sign it back to me.

He uses both PECS and Signing to communicate. He usually uses signing to express a need for food or drink or some action that he requires, like jump or spin. He is also uses signs to name farm animals. He uses PECS to request items that he desires. Most of his toys are stored in plastic boxes with pictures of them on the boxes. He removes the picture of the toy that he wants and brings it to me when he wants to play with it.

We also have a place in the kitchen where pictures of various food items are on display. Like most kids he is only really interested in the chips and biscuit pictures.

It’s been brilliant to see Matt express his likes and dislikes – for example his passion for seeing his mom and dad show affection. Whenever Lloyd comes home, Matt comes running to me and shows me the sign for “kiss” over and over until I ask him who I must kiss - he replies by signing "dad". When I kiss Lloyd, Matt visibly melts with delight. Only then will he give his dad a kiss.

I am thrilled that we have these two methods of communication. I often imagine what Matt’s world would be like if he didn’t have these two avenues of expressing himself.

There are some limitations though. Matt’s vocab is limited to what I can teach him, and I only know so many signs. Unlike other kids who hear everyone talking all the time, and can pick up any word that might seem interesting to them – Matt can only learn signs that I teach him. He might want to tell me about the singing octopus toy that we have; or point out to me the bright green frog at the aquarium but he doesn’t have the signs for those. I have noticed how kids often come up with the cutest or weirdest thoughts on matters that you did not expect them to have an opinion. Matt can only comment on the things for which we have given him the signs. It saddens me to think that he might like the rainbow that Barney sings about, or be drawn to the stingray puzzle piece and I won’t know that. I love hearing my friends share about how their little one said “the funniest thing other day”, but I do feel bleak that Matt doesn’t have that full freedom of expression because I can’t give him signs for every word.

My ongoing prayer is that God will equip us to help Matt to one day be able to express himself without limits. I am not sure what that will look like. I know that full communication is not necessarily reliant on speech, but I do still pray that Matt will speak one day. In the mean time I am determined to equip myself and those around me with as many resources to help Matt communicate to the full.

Our Speech Therapist saw Matt this week and feels that he is ready to move onto the 4th Phase of PECS. He is now able to discriminate well between pictures, and is able to correctly choose the picture to express his preference. I am still to find out all about phase 4, but I think it entails storing all the pictures in a folder and using that as a base from which Matt can remove the photo of the item he requires. I have already developed such a folder for my own storage purposes, but now Matt gets to use it too. So watch this space.

Love

The Bible says that if we have not LOVE then we are nothing "If I speak in the tongues of men and of angels, but have not love, I am only a resounding gong or a clanging cymbal. If I have the gift of prophecy and can fathom all mysteries and all knowledge, and if I have a faith that can move mountains, but have not love, I am nothing. If I give all I possess to the poor and surrender my body to the flames, but have not love, I gain nothing." 1 Corinthians 13: 1-7

nothing nothingWe are nothing without LOVE

It does not say if we learn to crawl long after most children crawl we are nothing It does not say if we struggle to learn how to speak we are nothingIt does not say if we grow up dependent on others we are nothingNo it says if we have not LOVE then we are nothing

This is helping us to free ourselves from worrying about Matt's development.

Rather, our goal is to let Matthew know he is LOVEDAnd to help him unlock the deep well of LOVE that God has placed in his heart...For then he will have LOVE and he will be something

Followers

RTS in South Africa

Connect more with others who have family members with RTS. Find out more about what resources there are in South Africa. Visit the RTS South Africa website:http://www.rts-southafrica.weebly.com/